Hi all. I’m hoping someone might know the answer to this prior to a doctor’s visit tomorrow.
I’m on Benapali, but didn’t take it last week due to a virus I picked up while away for the weekend (I thought I’d bring back a gift for myself). It’s a bit of a weird virus - it can’t quite make up its mind during the day whether its bad or whether it’s just a nuisance. At one point the cough is quite a hacking one, at other times it’s barely noticeable. Temperature goes up and down, but I do seem to have hot flushes whether it’s up or down (as you would with a cold, for example).
I went to the doc last Thursday and he didn’t seem concerned, saying it would go away within a few days. It hasn’t, so I’m going back. But my question is about what people’s expectations should be from a GP when on biologics. Is it that antibiotics should be given even if it hasn’t yet turned into a chest infection (as a preventative measure of sorts, to try to stop it turning), or are we to be treated just like anyone else with a virus/cough etc, and for it to take its course?
I’ve dealt with something very remotely similar twice since shortly before I got on the Enbril and just after. I got a persistent, dryish cough - a VERY slight fever if any - just before going on it. My rheumo said, “We really have to get your inflammation down, or you’re might have very significant joint damage. Let’s go ahead with the Enbril, and let me know immediately if anyhing changes with your cough.” I started the Enbril, and my PsA symptoms improved markedly, but I just kept coughing away. I got no therapy at all for the cough. I saw my primary doctor (who is my rheumatologist’s husband) a month or so later. I told him I still had the cough, along with some sneezing, butno fever, and shrugged. I said, “It almost feels like an allergy.” He said, “Well, maybe that’s what it is. Pick up some generic Clairitin and see what happens.” Two days later the cough went away, and hasn’t come back.
A couple of weeks into the Enbril, I drilled a hole in my finger. Same thing: keep an eye on it, let me know, no antibiotics (just a facetious lecture on not drilling holes in myself: his job). It took forever to heal, but now it’s pretty good.
I have no idea what to conclude from this, except that my two docs are VERY smart people who, when there’s a need to DO something, get right on it. Yet no antibiotics for Kutya! I don’t at all know the physiology of it, but it does seem that there is a reluctance to give antibiotics to PsA types. Maybe it’s a matter of medicine’s concern with the overprescription of such meds, but it seems as if it might be more than that. The most telling part to me was my rheumatologist’s taking so VERY seriously the dangers of not adequately treating the PsA. She’s probably seen the consequences - not pleasant - of failing to treat the disease aggressively enough.
So I guess my story ends happily, so far, and I hope yours does the same.
Sorry for so little helpful info in so longish a post.
You are correct, PsA patient s should avoid antibiotics as much as possible. There needs to be a very clear need. The common z pak in particular as it’s a part of one several families of abx that get t cells rocking and rolling… T cells aside from causing lymphoma, are what causes synovial inflammation (which of course is what we are trying to get rid of with biologics and such) There is also a 15 fold increase in IBS symptoms with PsA patients that have that blessing, when on abx.
So for expectations. Any doc who prescribes abx without clear evidence of BACTERIAL infection needs replaced. Any who prescribes for viral infections needs a new line of work
Oh flip. Just finished a course of antibiotics. Well I thought I finished it till I found two more packets of the things a week later … I did wonder whether 4 days was sufficient but it seemed to be. Probably the placebo effect.
I can’t replace my doc though. The way things are going here I’m lucky to see anybody who knows one end of a stethoscope from the other.
@darinfan, I think doctors need to keep a careful eye on us and we need to be vigilant too. Whilst we need to avoid unnecessary use of antibiotics, you’d want fast action if an infection was looking more severe. I accepted antibiotics because I’d had a sore throat and enlarged glands for weeks and even then I guess I should have questioned their use a little more.
Seems like as soon as I get my gut straightened out, I have to take antibiotics and it throws everything out of wack! But I guess when you have a gaping hole in your head, that is a good reason for antibiotics…
Unless I was feeling increasingly more ill with this cough by the day, I’d be steering clear of antibiotics generally. And I’d have to know for certain too if I had a bacterial infection before I’d dream of taking any. Get your GP to get it culturerd first.
So true. Thanks for the info tntlamb, I hadn’t thought about mixing antibiotics with the Enbrel. I will have to remember that. I have always tried to limit the number of antibiotocs I take anyway.
I’m on Enbrel and had 10 days of penicillin for strep a couple years ago. My doctor told me to hold off my Injection for a couple of weeks. All went well and my PsA didn’t bother me even though it was 3 weeks between injections.
Just a thought – antibiotics tend to be over prescribed anyway and as others have noted it’s best to avoid them in general.
Let your body do what it does best. When that doesn’t work (I’ve have several doctors tell me give it 10 day to 2 weeks) then you start looking for help from antibiotics.
It interesting, isn’t it? My GP jumps on anything bacterial with antibiotics (though I believe that is more a function of another GP in her clinic misdiagnosing, and a resultant unecessary death, because before that she never used to be so keen on them).
Nowadays, I must admit I’ve taken to assessing it myself, before discussing it with the GP. If it’s clearly bacterial, then I’ll figure how I feel, add in whether I’ve had any steroids, biologics, or MTX in the previous week, and take into account whether it’s already taken hold well, and whether it is in an organ that seems to spread at a quick clip, as well as my own personal susceptibility.
For example - I’ve always had a susceptibility to tummy bugs, and now that I take PPIs regularly, the chances I’m going to kick a bacterial tummy bug that has taken hold - not high. But chest infections, never really had problems with them, so would rarely even go to the doc with one. I almost never get a proper fever (not even with clinically diagnosed Salmonella), so I guess with chest infections I’m never really sure what type they are.
The thing that always surprises me, is that the GPs don’t seem to be inclined to do a culture (or in my case, since I never have high inflammatory markers, a CRP would likely give a clue), to assist with treatment decision. That has always puzzled me. I think I’ll ask my GP on next visit why not.
Sed Rate and CRP are pretty much worthless for us even when sick as we take multiple drugs that will skew the results. Even for “normal” folk , some drugs can affect your CRP level and skew the results of the test, so tell your doctor if you’re taking acetaminophen (Tylenol), ibuprofen (Motrin and Advil), nonsteroidal anti-inflammatory drugs (NSAIDs), and birth control pills regularly. Especially Birth control or estrogen rpelacements even Herbal if you are of a certain age. Even us guys have problems that way. In my case it was a bad case of the mumps during puberty. I know take weekly T-sshots and they screw up the works. Any of the ESR or CRP tests are non specific so you have to pretty clean of EVERYTHING for them to have meaning.
The exception for reason I have never figured out is RA. NSAIDS don’t have an effect fon CRP for RA patients…
Most folks who are ill have some kind of OTC drugs on board even a Hot Toddy (my go to) skews a CRP You ought to see my Markers after a weekend of celebrating Cinco d Mayo with a fair number of Margaritas and delaying my MTX…
Well, it is that time of year, bring on the Margaritas!
Interesting about the CRP - I always thought what you are saying is the case, but Australian Docs seem to believe in it sooooo religiously that I had started to think I was wrong.
When I say “believe in it” I mean there must be some rule that they teach in med school that goes something like this <5 - 20 - 40 - >100 (fine - virus - bacteria - dying).
You can really feel like you are dying, but if your CRP isn’t over 40, Emergency, the GP, anyone I’ve encountered here will send you home and tell you you’re fine. On the other hand, if it’s 80 in an otherwise healthy person, they seem to panic and try to insist it “must” be a bad bacterial infection (I had my old GP on the phone trying to send me to ED when I was fine, just a little case of recovering dengue, sitting working in a corporate office - of course, when the test was done two days earlier at the peak of the dengue, I did feel like I was dying, but I looked fine to him, so was told I was clear to go to work).
Perhaps that explains why my it took my sister 3 attempts to get admitted for appendicitis (by which time it had spread and gone gangrenous), and only a year later, another two for pancreatitis. Note to self; if you really believe you are sick, be the squeaky wheel!
Personally I see all this as a result of just technology advances on our modern world. If it’s not capable of showing up on a screen, it’s not believed. If it’s not showing up on an ‘objective test’ (also on a screen) it’s not believed.
As against all that though, without our tech advances, we’d be without the drugs that so help us.
Here in the UK actually physically getting to see a GP is quite arduous. You can usually talk to them on the phone but seeing them in person is a rarity. Hence last summer I spent two weeks walking (or rather hobbling) on two pelvic fractures simply because a doctor couldn’t physically meet with me. I think if on day one, I had had even a cursory physical exam, it would have been obvious an x-ray was needed. And of course that comes up on yet another screen. But without the physical exam then, the screen wasn’t authorised.
Wow, Poo, I didn’t realise getting to see a GP in the UK was so difficult! Is it just terrible wait times, or are they “triaging” people?
Here they have spent a fair bit of money trying to increase access to a GP (not your choice of GP - but a GP nonetheless), because they realised when people couldn’t see a GP they’d just turn up to ED, and it costs the government more.
Allegedly triaging people on the phone @Jen75 . However it’s a bit impossible though to work out the difference between a fracture (or two) and a PsA flare over the phone, sadly. At least it was for two whole weeks as I called them and talked to them on the phone, almost every day.
What was astonishing was the amount of opiods etc they were willing to prescribe as a result of my phone calls. And not actually seeing me at all. Thankfully I don’t much like opiods so usually after the first dose, that would get thrown away (as not helping) and I’d then make another call. And so on I went. Finally I was told over the phone to go the hospital. By that time I was incapable of driving, so I called an non-urgent ambulance. I wonder how much the various drugs cost, plus the ambulance, along with my daily virtually phone calls.
Yes, I suspect if they do the numbers they’d be better off with more GPs, though I suppose they are working on the theory that a high percentage of visits are unecessary (viruses etc), so they can save money by using the phone.
Doesn’t say much for their triaging skills tho - right after amputated limb, and clear bacterial infection, they really need a category for “needs a clinical exam to determine”, sitting well above I’ve had a cough for 5 days, and I need my pill script refilled
Excellent Plan however I would suggest one addition NO USING CODES instead of actual descriptions. “Phone triage” being the thing now, heres how it can go terribly wrong… Last week I had a bit of difficulty with my near amputated thumb after they remove the buttons, splints etc. and declared I was on the road to recovery. (Basically the entire tip turned to one very large blood blister) Went over the issues with the PA who apparently took copious notes, coded everything and decided I need the surgeon. I showed up at the approriate time, The surgeon breezed in looking at the notes and codes, looked at the PA and asked “so exactly why do you think we need to finish amputating the thumb at this point?” Apparently he left out a decmil point in the procedure code. The lanced the blister wrapped and sent my way after correcting the code and informing me my shovel was now off limits too.
